Overcoming Misinformation in the Diagnosis and Treatment of Kidney Cancer for Patients and Caregivers - Dena Battle
March 18, 2021
Dena Battle, Co-founder, and President for KCCure a passionate kidney cancer patient advocate. She began her career in Washington, DC, as a congressional aide, and went on to work as a lobbyist for more than 10 years, working primarily on tax and healthcare policy. She serves on the Advisory Board for the Johns Hopkins Sidney Kimmel Cancer Center and as a member of the Patient and Family Advisory Council. She has testified before the FDA – Oncological Drug Advisory Board (ODAC) and helped co-author an NCI-ASCO-sponsored paper on improving end-of-life care for cancer patients. In 2009, at the age of 40, Dena’s late husband Chris was diagnosed with metastatic kidney cancer. Together, they began a quest for the best care possible to combat the disease. Chris was treated at four different comprehensive cancer centers and participated in multiple clinical trials.
Jaime Landman, MD, Professor and Chairman, UCI Department of Urology, UC Irvine Medical Center
Sumanta Kumar Pal, MD, Associate Professor, Department of Medical Oncology and Therapeutics Research, Co-Director, Kidney Cancer Program, City of Hope
Jaime Landman: Welcome to Kidney Cancer Today. This is Jaime Landman, I'm the Chair of the Department of Urology over at UC Irvine. I'm here with my brilliant partner.
Monty Pal: Hi, I'm Monty Pal, medical oncologist at the City of Hope Cancer Center in Los Angeles.
Jaime Landman: Today we have a very special four-part series that we are about to launch. This is a Myth Buster series and it is going to be a collaboration between Kidney Cancer Today and KCCure, and we are delighted to have an absolute regular now, Ms. Dena Battle, President of KCCure. Dena has brought to our attention that there's a major problem with some myths, and we're going to talk today about defining these myths and contributing factors, how we, as a medical community, can partner with our patients to help dispel these myths, and then figure out how to make the world a better place. So Dena, thank you so much for bringing this to us.
Dena Battle: Thank you, guys. It's wonderful to see you both. Again, I appreciate this forum and what it's done for patients, and I'm extremely excited about this effort and what we can achieve together.
Jaime Landman: Well, you're doing amazing things with KCCure, and in fact, it was you who informed me that 90 million Americans have participated in some kind of community, so this is not a small enterprise. This is a massive enterprise, and thus the importance of Myth Buster is so we can make sure that those patients who are participating actually get the very best of care. If you don't mind, I'd love to jump right in and ask you a few questions. Let's talk about defining a myth. What's the difference between, for example, misinformation and disinformation?
Dena Battle: Yeah, we hear a lot today about fake news and it's certainly an issue with social media, and, as you mentioned, now that so many people are receiving information through healthcare communities like this, it's a really important topic. Disinformation is false information that's being spread with the intent to spread harm. In our healthcare communities, disinformation, honestly, we don't see it quite as often. An example of this would be someone coming in and saying, "I have a cure for kidney cancer. Send us your money. We have a money-back guarantee." That type of thing is people see it, they recognize it, and it's just kicked out immediately, so we can crowdsource that out. Misinformation is false information without the intent to spread harm. So this is information that people are sharing and they really often are very well-intended in what they're telling people.
Monty Pal: I think that's a phenomenal explanation. Can you give us a sense, Dena, what are some of the contributing factors to this? What's really driving the misinformation and disinformation that we're seeing on the web these days?
Dena Battle: Yeah, so one thing, and I'm so appreciative of all the providers that work hard, but most of these myths start with doctors, and that makes it a little more complicated, because for patients it's coming from a very authoritative source, but there are a few things I think that contribute to that communication. The first thing I would say is practice change. We like to think of medicine as something where we know everything and that it's not something that's constantly evolving and changing, but the truth is it is science that's constantly evolving and changing. I'd love to hear you guys talk a little bit about, as providers, what does a practice change constitute and what does it take for a practice change to occur?
Jaime Landman: Well, I think that's actually a good question for us to answer individually because I find that in different fields it's culturally different. Some professions are very data-based and they have guidelines that they adhere to fairly strictly based on data. Other ones are somewhat cultural and a little bit slower to adapt to new data. I sadly fear that urology has been, in the past, a bit more of a cultural organization and population and that we are a little bit slow to adapt to new data, but I see that correcting, which I really like, and people are more starting to adhere to guidelines. How about you, Monty? I think oncology might be the converse.
Monty Pal: Yeah, yeah. For the most part, I think you're absolutely right, Jaime. I think that in medical oncology we've become accustomed, whether it's GU oncology or breast oncology, to looking at big randomized Phase III trials as sort of setting our tone of practice. I think the big challenge becomes, there's very little to differentiate one Phase III from another, from another, and from another, and that of course creates some room for perhaps investigator biases. Then there are all those soft elements of medical oncology that we don't think about. What type of imaging is optimal for patients, for instance? Whether or not surveillance for metastatic disease is an appropriate strategy. The wheels are spinning here. I think there's lots of ground for us to cover Myth Buster's topics if you will.
Dena Battle: Yeah. But I think practice change and also a more mild or just the lack of consensus that sometimes happens, where there isn't enough evidence to really have a hard guideline. A great example in kidney cancer is the surveillance strategies follow-up for localized disease. Patients all over the map, what a doctor might recommend, part of that is we lack some of the evidence we need for really stringent guidelines.
So when one patient goes to their doctor and they say, "Oh, we're going to follow-up with an ultrasound," and another doctor is following up with a CT scan or PET scan or 10 different scans, that makes it really hard for patients to know, "Well, what is the right scan for me to get?". And they might feel very strongly about the scan that they're getting, so as someone new comes into a community and says, "I have just been diagnosed," they're going to offer the information that was given to them. Over time, that information is going to be shared over and over again, and that's really how these myths are created.
Jaime Landman: I just turned red because I see 5 to 10 patients a week with small renal masses that I'm actively surveilling and we have one of the largest series in the world, and you're right, I'm embarrassed. Now, the beauty is you have to balance ionizing radiation with oncologic control, but also my job is to make a shared decision with the patient, but that, you see, is a wonderful discussion for another day. But I did turn beet red because I really work with the patient individually to make that happen, but we don't have a standardized protocol and there probably is a best practice out there, a platonic best practice, that we should identify.
Dena Battle: Yeah. Absolutely. But these are just the types of things that these different entities and communications all sort of contribute to that, to the building of these myths. The other thing that a lot of people don't understand about patient communities, and this is true from an outsider view from providers probably, but also the patients that are in those communities, is the makeup of the community has a real statistical bias. So people that are going to join a kidney cancer patient community are more likely to have metastatic disease or a complicated case, they're seeking out help because their case was a little more complicated, they tend to be younger, we have a lot more women, and sometimes because all those people are congregating together, it'll lead people to believe that maybe things have changed.
For example, if you see a lot of people who've had recurrent disease after surgery, it gives the impression that maybe recurrence rates are higher than what they were told by their doctor. And that's really just a matter of statistical bias in the community. We do try and educate patients, remind them, that our communities don't really reflect what you see in the statistics.
Then the other thing that contributes to the issues with practice changes, we have long-term patients who were diagnosed decades ago and then we have patients that were just diagnosed yesterday, so if practices have changed since their diagnosis, they might be sharing information that has changed a little bit over time, so that can really kind of contribute to that type of thing.
Monty Pal: Yeah. Well, let me ask you, how can we as physicians help, Dena? Is there anything that we can do to help dispel some of these myths and what have you?
Dena Battle: Yeah, I think so. One thing is to always keep in mind that today, the way that information is shared and because these communities are such an important part for so many patients, remember that the advice that you're giving to one patient might actually be shared outside to other communities, and so it's just something to be cognizant of and keep in mind.
The other thing I would say is to use consistent messaging. I'll use biopsy as an example. I know that's one of the things we're going to talk about in the next session. If you have a patient who has a small renal mass and you're going to do a biopsy for that patient, the doctor might say something like, "Hey, there might be some mild discomfort, but this is a perfectly safe procedure." And then a urologist who sees a patient who has a 10-centimeter mass might not think of biopsies necessary. The patient might say, "Why aren't you doing a biopsy?". They sort of expect that that might happen in cancer, and to calm that person, they might say something like, "Oh, you don't need a biopsy, and actually there are some risks that are associated with doing a biopsy."
So suddenly you've told this patient it's risky, and now they might come into a community, someone who has a 3-centimeter mass says, "Oh, should I get a biopsy?" And this person says, "No, you should not get a biopsy. It's a risky procedure." So use consistency. If you're going to tell one patient that a procedure is safe with mild discomfort, don't tell another patient that it's risky or invasive.
The other thing I'd say is to be cautious about really inflammatory terms. Terms like "always" and "never", "terminal". Is it "harmless"? Things that are really to one side or the other. I think that that can sort of contribute to this communication gap that sometimes occurs with patients. If a doctor says, "We never do biopsy in kidney cancer," or, "We always do surgery and kidney cancer," these are the types of things that say, "In your case, it's not necessary." I think those are some of the ways that we can shift the communication.
Monty Pal: I can think of so few absolutes of medicine. There's a real art to this, isn't there? Dena, I'm going to let you wrap up before Jaime closes here by really describing for us the goal of this series briefly. This was really your conception, Dena. I've got to give you and KCCure credit for bringing this concept of Myth Busters to the table. What do you think we can achieve here?
Dena Battle: Well, my hope is... KCCure, we strongly encourage people to join patient communities. We think that this is one of the best ways for patients to get good information and to receive the emotional support they need, but we want to make our communities even better and stronger. So our goal with this is first to identify. These myths are rare, but when they occur, they're problematic, so we really want to identify them and figure out where the problems are. And then work with you guys to really help clarify so that we can educate them, and hopefully, that will help us get the message out to communities and help break down these myths and improve the messaging so that people learn that biopsy is safe when it's needed, that type of thing.
Jaime Landman: Again, Dena, thank you so much. You've become such a critical partner in this enterprise. Monty and I started the Kidney Cancer Today because we realized that there was so much need for sharing very important information, and you've brought a massive and very important new dimension to this. This partnership, the Kidney Cancer Today and KCCure Myth Buster series is going to be, I think, really interesting, quite frankly, intellectually fun, because I think we need to explore these issues, and so important and impactful to our patients.
So with your help, we've identified four that we're going to be doing. Four separate episodes. Contrast material, is it an evil fluid that is destructive, or the best thing ever? Biopsy of the small renal mass, should we do it always or never, or perhaps there's some important balance in between? Every patient needs an oncologist, and there Monty and I will put on some gloves and really duke it out, which I think is absolutely incorrect because I think we feel like the partnership is very important. Then PET scan, is it the most magnificent thing ever, or is it utterly useless, or somewhere in between? And with those four, I think we'll bring a lot of value and we'll close this episode of Kidney Cancer Today. Thank you. Dena Battle, President of the KCCure. I'm Jaime Landman, Chair of the Department of Urology over UC Irvine, and my better half.
Monty Pal: Thank you so much, Jaime. Monty Pal here signing off for Kidney Cancer Today. Have a great day, everyone.
Dena Battle: Thanks, everybody.